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The end of chemo

Asa's last dose of chemo was given 6 weeks ago, and he's now largely recovered from the side effects -- he's comfortable, his appetite has returned, and little hairs are sprouting all over his scalp.

I’ve been remiss in sharing this news, in part because as soon as the chemo finished, Asa developed chicken-pox, and we were thrown back into emergency mode.

He broke out in spots on May 28, and at that point, his immune system was still compromised, and we were afraid the chicken-pox was going to be unusually severe.

On doctors' advice, Asa was kept in hospital for 10 days on IV Aciclovir, a drug that slows the reproduction of the virus. 

In the event, the chicken-pox was mild, and the spots didn't seem to cause him much pain.

There was still some systemic imbalance that needed to be sorted out afterwards: Until last week, his potassium levels were still low, and we continued giving him supplements through his NG tube.

But by last Saturday, he had normalized, and we pulled out the NG tube.

Asa, a few days before his NG tube was removed.

Perhaps that would have been the appropriate time to have thrown a party.

It's difficult to describe what a relief it is not to be giving Asa medicine, after 5 months when he rarely went without at least one or two doses of some drug or another each day.

What next?

Many people would like to know whether the chemo worked. 

We may have partial answers within the next couple of days.  

This afternoon we travel to London, where Asa will have two eye exams -- one a vision test at which he's presented with various stimuli and the doctor tries to evaluate how well he sees; and another, tomorrow, when his eyes are examined while he's under anaesthetic.

We have to think about these tests not as the final exams after chemo, but as the first after chemo. 

The reason is that, even if the tumours appear quiescent, there's still a chance they could reactivate in future.

Asa will need exams under anaesthetic roughly on a monthly basis from now until he's about 5 years old (when the risk of new tumour activity decreases).

The prognosis we'll get tomorrow, then, probably won't be for the long term, but "for now".

Thank you!

This is a good time to acknowledge our gratitude for the people and institutions that have helped us get through the last 5 months.  A short and certainly not exhaustive list must include:

1.    Selam – who first noticed the signs of retinoblastoma, and sounded the alarm, and who has done more than anyone to bring Asa this far
2.     The National Health Service – which has given us access to excellent medical care, from specialists to community nurses who visit our home every week
3.    The grandparents, especially Kay and Clive, who have provided support to us all throughout
4.    Other friends and family who have kept our spirits up through the difficult times.

Thank you all!

A few words from Asa

It’s partly a testament to the contributions of all these people, and partly due to his own resilience, that Asa's been developing normally though all of this.

Right now he has a receptive vocabulary larger than we probably realise. He knows the words -- in Amharic or English or babytalk -- for breast ("tuut"), blender ("Nnnnngggg!"), hand-washing ("water-play"), piggy-back ("che-che"), "up", and "down". 

The comprehensible utterances he produces are limited to daddy ("Adada"), mummy ("Mama", which for some reason he says much less commonly), and "There!"

Beyond this, he is a great mimic, imitating sounds -- the noises of the washing machine, cars, coughs and sneezes, and the melodies of familiar songs ("This old man…" and "Twinkle, twinkle, little star") -- and actions like eating, scrubbing, and sweeping: things he’s seen us do a lot.

For a long time Asa was a slacker in terms of chewing his food, but he's making progress on that front now, and in the last few days he's chewed and swallowed bread and raisins.  Biltong next.


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Blind for a day

My mum likes to say that we learn about our bodies the way we learn about cars -- each time something goes wrong, you get acquainted with a new branch of mechanics.

As various treatments have been tried out on Asa, we've learned more and more about cancer and the eye.

The graph below summarises the treatments Asa's received these past 18 months.

Situations where retinoblastoma fails to respond to both primary and secondarychemo are rare, and even at one of the world's specialist treatment centres, a doctor might see such a case only once every few years.

 Support research on eye cancer here.
Right now we're in a place, therefore, where epidemiology and large trials have ceased to help much, and clinical judgment becomes very important.

As Dr Jenkinson -- the oncologist we met with in Birmingham -- said, "We're beyond the situation where there's a firm evidence base."

What's required then is very close attention to the details of the disease as it'…

Mixed results

Last Wednesday Asa was put to sleep and underwent an eye exam under anaesthetic. 
The first since the beginning of the new chemo, the exam showed that the drugs have had a "partial effect."

In Asa's left eye, the tumours responded well to the chemo. 
But in the right eye, there's been a slight increase in tumour activity.
And in the left eye there's a cataract developing.
A mixed bag
This was not what we'd hoped to hear.
We had reason to expect that the TVD (topotecan-vincristine-doxorubicin) combination would lead to shrinkage of the tumours in both eyes. 
And the appearance of a cataract -- a clouding of the lens -- at this stage is unusual: puzzling to the doctors as well as us.
While cataracts can be removed through surgery, cutting into the eye when there are active tumours inside is not advisable. So treatment for the cataract itself will have to wait until the tumours are stable.
The main risk in the near future is that the cataract may make it difficult to moni…